02/09/2024
🦓 🦓 🦓 🦓 🦓 🦓 🦓 🦓 🦓 🦓 🦓 🦓
Rare Disease Day takes place worldwide, typically on or near the last day of February each year, to raise awareness about rare diseases and their impact on patients' lives. February was chosen because it is the rarest of all months. The Zebra is also used as a symbol to help represent rare diseases.
My son has a rare genetic condition, CDG SSR4. Each zebra at the top of this post represents a specialist that he sees regularly, be it every 6 months or annually. His journey has been very scary at times, and very unpredictable. There are so many unknowns. . .
But he has also brought us great joy. His smile and laugh can brighten any room. It’s contagious 😊. I’ve spent the last 5 years pushing for help and advocating for him. We’ve made many sacrifices. And he’s worth every bit of it, as are all the other people with rare conditions. They deserve to be seen and cared about.
In honor of Samuel, I’ve created a shirt design. For every shirt/sweatshirt sold, I’ll be giving $5 to CDG research. This design screams zebra, with a large green “S” for Samuel. The green color was chosen because it is the color of his condition. If you would like a shirt, please comment or pm me.
If you order before end of day on Tuesday, February 20th, I can have your shirt to you in time to wear on February 29th.
Tshirts S-XL $20
Tshirts 2x, 3x $23
Sweatshirts S-XL $30
Sweatshirts 2x, 3x $33
